Posts Tagged ‘Sexuality’
Wednesday, January 6th, 2016
They come from nearly every corner of the world. They are engaged in local communities and on the international scene. They include mothers, artists, a fugitive, a performer, and a drug smuggler. They are speaking out, acting up, and in some cases risking their personal safety and liberty.
They are the 16 HIV advocates to watch in 2016, and they inspire and humble me. It is such a privilege to share their stories with you and highlight their important work. Their twitter handles and other social media links are included whenever available; I urge you to follow them so these advocates can inspire you all year long!
And now, it is my honor to present…
Big Bear Lake, California
Straight men living with HIV aren’t unicorns. They do exist. But being public about their status means facing an additional layer of ignorance. Joshua Middleton has every intention of changing that. “I’m putting a face on the heterosexual HIV positive male that is often silent in this fight against HIV,” says the 25-year-old Californian. “I want to show the world that there is always hope.”
Joshua has started his own blog, contributes to TheBody.com, and has dived into the HIV advocacy arena with vigor and youthful enthusiasm. He has become an avid supporter of PrEP, uses his fluidity in multiple languages to share HIV messages, and wants to pursue a law degree for the express purpose of defending those being unfairly prosecuted by HIV criminalization laws.
“He is a loving soul,” says Maria Mejia, the popular social media personality and HIV positive advocate. “He represents a new generation of activist and I am always so proud to see a young heterosexual male stepping out of the HIV closet.”
“Sitting on the sidelines is not an option for me,” says Joshua. “I’m going to be a driving force until the day when HIV becomes yesterday’s news.”
If and when Kenny Brandmuse returns to his home of Lagos, Nigeria, the reception might not be a welcome one. Shortly before he left two years ago (escaped might be a better word), he was receiving threatening phone messages from anonymous strangers. “They wanted me punished for my sexuality,” says Kenny. “I was already being investigated by the court, and I had to stop attending the hearings because the unfriendly crowds outside the court were becoming larger.”
The threat to his safety became too great, so Kenny managed to get to the United States by seeking an advanced degree at a Baltimore college. Then he found the ideal job – and a work visa – with the Baltimore Health department to design programs for gay black men that address HIV stigma. He loves the work but can’t help but feel anxious about the future, once the visa ends. “It’s like walking on needles,” Kenny says.
Part of his troubles in Nigeria were due to Kenny being an outspoken gay men living with HIV. Kenny founded Is Anyone In Africa?, an online community for African gay men and those living with HIV. It has helped over 500 men and women receive care without fear of being outed since being launched only one year ago.
For 2016, Kenny has a simply goal: to see a more empowered gay community living in homophobic Sub-Saharan Africa.
Pioneering African gay rights clergyman Jide Rowland Macaulay, founding pastor of House of Rainbows, has a unique understanding of Kenny’s journey. “Kenny coming out about his sexuality and HIV status has made many of us come to a place to be realistic and reconcile the odds against discrimination,” Jide says. “As a child of Nigeria, he has by default positioned himself carefully as heroic, it is my hope that the nation would find in her heart to celebrate him.”
Whether or not Nigeria is ready to celebrate the return of Kenny Brandmuse remains to be seen. His work visa expires in 2018.
(Photo credit: Olubode Shawn Brown)
If the photo of Greg Owen strikes you as sexually provocative, then he’s just doing his job. The London-based advocate likes starting conversations about sex. “It is incredibly important for us as gay men to remain not just sex-positive but to keep reaching and working towards a complete sense of well-being. Emotional, mental, sexual and social,” says Greg. “When we are looking after ourselves, we become more resilient in dealing with the curveballs that life sometimes throws.”
Greg faced a major curveball only months ago, when he decided to begin taking PrEP himself (because Truvada as PrEP isn’t yet available in the United Kingdom, Greg acquired the drug from a friend who had stopped taking it as an HIV treatment med). Everything was in place, until Greg got tested before beginning PrEP and discovered he had become HIV positive since his previous test. His own decision to start PrEP was just a few months too late. His idea to write and share his own “PrEP Diaries” instantly became his “Diagnosis Diaries.” His activism did not skip a single beat, culminating with his popular site, “I Want PrEP Now.”
Gus Cairns, the enormously influential editor of AIDSMap, is duly impressed. “What I particularly like about Greg is that although he knows what he’s doing, he is conspicuously not a saint,” he says. “He knows instinctively that the best way to sell HIV prevention is via sex, not by finger-wagging about it. He lives his life rather nakedly in public and is both an inspiration to others but also, now and then, a burden to himself because of it. I follow his activist career with a paternal eye.”
Joey Joleen Mataele
Nuku`alofa, Kingdom of Tonga
In Tonga, when a transgender person (known as “leiti”) is seen walking down the street, someone might use a cruel shorthand to refer to them. They simply call them “AIDS.” It is in that discriminatory environment that Joey Joleen Mataele founded the Tonga Leitis Association in 1992, and she hasn’t stopped fighting for her community ever since.
An active figure on the HIV awareness scene, Joleen has witnessed firsthand the harassment and discrimination suffered by LGBTIQ people in Tonga and the South Pacific. But Joleen had a not-so-secret weapon: her own visibility as a singer and entertainer. “The culture of the pacific is open to humor, song and dance,” Joleen says. “So, I founded the Miss Galaxy Queen Pageant to raise awareness and to support our community.” The pageant event became an enormous phenomenon, raising crucial funding and even garnering the support of Her Royal Highness Princess Salote Lupepau’u Tuita.
Joleen, who is also raising five adopted children at home, is just as ambitious in her goals for 2016. “I want to strengthen the Tonga Leitis community advocacy to effectively address the health, rights and well-being of Tongans and Pacific Islanders of diverse sexual orientations and gender identities,” she says, “and to provide an inclusive environment that celebrates diversity in all forms.”
“Joleen has been a beacon of hope for those living with HIV and AIDS in the region,” says Resitara Apa, former secretariat of the Pacific Diversity Network. “She works to ensure that the people of Tonga are educated about HIV so they stop discrimination and start caring and loving those living with HIV. Keep an eye out for her in 2016 and see her make changes for those who have no voice.”
Winter Haven, Florida
The Positive Women’s Network USA (PWN USA) could easily generate an activist list of their very own, considering how ferociously powerful the organization has become in recent years. One advocate who has benefited from their inspiring female power is Floridian Kamaria Laffrey.
“More and more women are coming out of the shadows,” Kamaria says, “and helping to break down misconceptions of HIV.” Her work with PWN USA, We Make the Change Florida, and as part of a strategy team with The SERO Project to repeal criminalization laws, is keeping her schedule brimming with advocacy activity. “I am continually fueled to find ways to share purpose beyond pain when issues of criminalization, reproductive injustice, and overall stigma prevent people from seeking treatment, staying in care and living the abundantly full life they deserve.”
Kamaria credits her religious faith for getting her through her diagnosis in 2003. “Being a woman of faith has often made me feel torn in what I view as a really sensitive culture. In the faith arena, I feel that many layers of HIV aren’t addressed, just those that feel less controversial,” she says. “And outside of the faith world, I sometimes feel as though I am not taken seriously because of my beliefs. But I have hope for change.”
In 2016, Kamaria will be focused on making her organization emPOWERed Legacies officially a non-profit, completing her book, Chasing Waterfalls, and making a mission trip to Haiti.
Tami Haught, the SERO Project Training Coordinator who led the fight that successfully updated Iowa’s HIV criminalization laws, believes Kamaria’s spirit may be her most valuable tool as an advocate. “Kamaria has so much energy, her smile lights up a room,” Tami says. “Her spirit and resolve are inspiring, and she is a power to be reckoned with in Florida.”
German activist and filmmaker Nicholas Feustel is committed to his PrEP advocacy body and soul. In fact, with no other options available, he is using his body as a quality control measure.
Nicholas has already made an enormous contribution through his video production work, creating documentaries on HIV criminalization, prevention, and living with HIV. But it was the advent of PrEP that re-energized his efforts, leading to his documentary on the groundbreaking PROUD study on PrEP. Even so, he still saw roadblocks to bringing the drug to Germany.
“I realized there is a big language barrier,” Nicholas says. “All the latest and useful information comes out in English first. So I translated articles, wrote my own, and launched the first German website on PrEP. I’ve been trying to make people here in Germany understand what PrEP is all about, that it is so much more than just taking pills.” As a direct result of Nicholas’ efforts, Germany’s leading AIDS service organization, Deutsche AIDS-Hilfe, is pro-PrEP after a period of skepticism.
But a huge barrier remained: Truvada as PrEP is not approved in Germany. That’s when Nicholas got really creative.
Nicholas learned he could legally import, without a prescription, a generic version of Truvada from India if it was shipped to the United Kingdom. He retrieved it there, began the regimen himself, and then had his blood levels tested for Truvada’s active ingredients to be sure the generic version was legit. It was. Anyone familiar with early HIV treatment activists leaving the country in pursuit of effective medications will appreciate Nicholas’ ingenuity.
Edwin Bernard, the internationally renowned coordinator of the HIV Justice Network, holds Nicholas in a special kind of awe (in a match made in HIV advocacy heaven, the two are longtime partners). “Nick always goes the extra mile in his PrEP advocacy,” Edwin says, “including turning his own body into a political petri dish and posting his own drug blood levels online whilst on cheaper generic Truvada.”
The staggeringly intelligent Canadian Ian Bradley-Perrin likes to figure out how systems work – and why they allow access to certain people while others are left behind. Lucky for us, the PhD student in Sociomedical Sciences at Columbia University in New York is applying it to the healthcare of people living with HIV.
“I’m interested in how social movements shape who gets a seat at the table of policy making,” says Ian, “and how class, gender, race, and health intersect to produce particular understandings of the needs of HIV+ people.”
Ian is also fascinated with the history of the HIV epidemic, and the “historiography of AIDS” in particular. “It’s the study of how the history of HIV/AIDS and the artistic and symbolic products of activism around the issue get written,” he says. “What are the narrative trends, tropes, and what is missing. Essentially, instead of just the story of AIDS, it’s the history of the way we tell the story of AIDS.”
Ian will publish much of this in various papers in 2016. He will present on the topic of stigma and public health at Columbia this year, and is applying his knowledge to an initiative investigating community organizations in the Deep South and how the CDC funds them.
“Ian has an incisive ability to see the interconnections between the disparate social, cultural and policy implications of living with HIV in a post-HAART world,” says Avram Finkelstein, founding member of the Silence=Death and Gran Fury collectives. “He has already done significant work around HIV criminalization in Canada and spearheaded complex conversations about the recent attempts to construct an HIV/AIDS history in the midst the pandemic.”
If you talk to anyone who works with communities at HIV risk in the Asia Pacific, the conversation will quickly turn to the work of Midnight Poonkasetwattana, the extremely busy head of the Asia-Pacific Community of MSM Organizations (APCOM) in Bangkok, Thailand. In a region in which a huge portion of new infections are among gay men, he has his work cut out for him.
“At the heart of HIV response is the need to recognize the rights of people regardless of their sexual orientation, gender identity and expressions,” says Midnight. “As a gay man this is important to me. In the Asia Pacific region, gay men and men who have sex with men (MSM) will account for 50% of new HIV infection in 2020 – we only have a small window to avert this.” APCOM has stepped up HIV testing and outreach to younger MSM and transgender youth.
“What keeps me going is the desire to see change,” Midnight says. “I want to see strong community organizations that are being recognized and treated as experts; not just as rhetoric that we normally hear. I want to bring in new and younger people to the movement to form new responses and ensures that we keep apace of the changing dynamics and that we are changing hearts and minds.”
Chris Beyrer, the current (and first openly gay) president of the International AIDS Society, has great confidence that Midnight will be a force for change in 2016. “Midnight is a dynamic emerging leader,” says Chris. “He is leading the community charge for sex positive PrEP programming in the region—where not a single Government is currently providing PrEP through national health systems. He’s out loud and proud, and a great voice for our global community.”
Nearly ten years ago, Lizzie Jordan became a mother, a widow and tested HIV positive all within an 18 month period. So, she left her London fashion career and returned to rural Lincolnshire to be near her family. She did not yet know that her personal tragedy was forging an activist with an important purpose.
As a single mother to a grieving child, Lizzie wanted to find resource and training for her child’s primary school. How could she help her child’s teachers, much less her classmates, learn to speak openly and compassionately about HIV?
Joining forces with friend Naomi Watkins, the pair sought to do something about the “uncomfortable silences” young people often felt when discussing sensitive subjects with the professionals involved in their lives. After months of planning, their agency Think2Speak was founded to provide age-appropriate guidance and support on issues such as mental health, bereavement, abuse, and yes, HIV and sexual health.
In the year ahead, Lizzie is “looking forward to working with schools, throughout the UK, encouraging young people, and those working with them, to learn and discuss responsible sexual health.”
Tom Hayes, the activist and editor of the online magazine Beyond Positive, is both a friend and a fan. “Lizzie is a great advocate because she has such passion for what she does” Tom says. “She’s such a kind, warm and generous person. She set up think2speak all whilst running her own marketing company. Impressive isn’t the word.”
When you visit the Twitter page for Robert Garofalo, it isn’t really a page about him. It’s all about his dog, Fred. And that is the first thing you need to know about Robert’s activism.
The Professor of Pediatrics at Northwestern University has devoted his career to the care of HIV+ adolescents and has done a fair amount of HIV prevention interventions for young men who have sex with men and young transgender women. But let’s get back to the dog.
Robert founded Fred Says to raise money for agencies across the country that care for HIV+ young people. “I wanted to do something that was personal and creative,” says Robert, “and that tapped into the gratitude I had for my dog, Fred, who quite literally saved my life after my own HIV diagnosis in 2010.”
The photo essay project When Dogs Heal, launched in 2015, was the result. “Our hope was to change the narrative about HIV to be about love, hope, survival and thriving while living with HIV — all while giving credit to the healing powers of our pets,” says Robert. “Our hope in 2016 is to turn When Dogs Heal into a traveling art exhibit and to turn the project into a book.”
Charles Sanchez, the writer and star of the web series Merce, which features a lead character living with HIV, knows a little something about employing creative talents as an advocacy tool. “Sometimes a dog is more than just a man’s best friend, but also his best medicine,” says Charles. “Rob’s project has the potential to change people’s minds about what someone with HIV looks like. His work inspires me.”
(Photo credit: Jesse Freidin)
Auckland, New Zealand
Charlie Tredway has experienced his share of HIV stigma. “I’ve had people using my positive status as a weapon against me and been abused online and felt undateable,” says the activist and staffer at the New Zealand AIDS Foundation. His response, though, has been to only increase his visibility as a person living with HIV. As far as Charlie is concerned, the strategy has worked. “Since going public it has weeded out the ignorant,” says Charlie. “The only way to combat that stigma is through honesty and making HIV personal and visible.”
Charlie has personally backed up his theory, working with the Aussie organization The Institute of Many as a senior moderator and appearing in their cheeky “Wizards of Poz” social media campaign (as Dorothy, no less).
Coming to this place of transparency hasn’t been an easy yellow brick road for Charlie. “I didn’t have proper follow up after my diagnosis and wasn’t engaged in any services or support or linked into adequate care. I just completely dropped the ball because I felt healthy.” Only after several years did Charlie turn things around. And it was then that he realized that no one could make him feel badly about himself without his consent.
Looking back, Charlie turns a critical eye to New Zealand’s policy of not treating HIV patients until their t-cell count falls below 500, something he feels may have kept him from care for too long. “It is stupidity of the highest order,” says Charlie. “Not only does it going against WHO recommendations, it also takes away the HIV positive person’s right to take ownership of their health and start treatment.”
That kind of candor has been characteristic of his advocacy. “I am someone who consistently puts my foot in my mouth,” he says, “and yet I have a platform to speak publicly on important issues so there is always a small fear that I will cock it up somehow. Luckily, I have amazing mentors and peers who encourage me to focus on my own truth.”
Those mentors include Australian activist Nic Holas, the founder of The Institute of Many. “What I admire most about Charlie is his tenacity,” Nic says. “He is a fiery little SOB who stands up for the little guy, but also challenges the victim mentality so easily adopted by many in our community.”
São Paulo, Brazil
Since testing positive at the age of 18, Brazilian activist Diego Callisto hasn’t wasted any time making an impression. The driven young man with the piercing green eyes has focused them squarely on tracking and treating the HIV epidemic, quite literally around the world.
Diego is a member of the Youth Task Force of UNAIDS and the Y+ Leadership Initiative. Although Diego is still polishing his English language skills, his passion is crystal clear. “I promised myself following my diagnosis that I would devote to the fight against AIDS,” he says. “Even losing boyfriend and dear friends, I follow through, willing to find more strength and determination to have a world free of stigma and discrimination against AIDS.”
Diego sees HIV as a “human development problem” that must be addressed through programs like the Sustainable Development Goals of the United Nations global agenda. “HIV requires mobilization of all sectors of society and advocacy for human rights and to combat stigma and discrimination directly,” says Diego. “We must also strengthen discussions involving the implementation of PrEP as a measure of primary prevention in the context of combination prevention. PrEP is key to reducing new infections and is a great strategy.” Strengthening this agenda is his goal for 2016.
“Diego Callisto represents the new generation of AIDS activists,” says Mariângela Simão, Director of Rights, Gender, Prevention and Community Mobilization for UNAIDS. “As a young person living with HIV, he brings a very much needed message of hope to other young people living with HIV in Brazil. At the same time, he has brought the Brazilian voice to a different forum. We need more leaders like him.”
All Cassie Warren wants for 2016 is a cute mobile van.
The Youth Health Benefits Counselor at Howard Brown Health Center is happy to explain, and with great persuasion, that a mobile van represents many of the issues relating to providing health care to young people. “I think if we want to make PrEP, hormones, and birth control more accessible to young people we have to reduce the number of things you have to do to get it,” Cassie says, “and we have to do it in a youth-centered environment. We have to bring it to them.”
But wait. Cassie isn’t done making her case. And she even broadens it. “There are a lot of folks out there who think young people can’t be adherent or don’t care about their health,” she says, “and those folks have absolutely no business providing care to young people. We need to look at the structural barriers and find ways to reduce and eliminate those.”
Cassie take her job helping young people navigate healthcare systems personally. “My work is rooted in a deep love for community and uplifting that love against systems that aren’t,” Cassie says. “Many young people experience trauma by the U.S. medical system. So, until we get real healthcare reform, you do what you can to create a safer space for folks to get what they need, and to feel celebrated and autonomous in their bodies.”
Jim Pickett, the HIV prevention advocate at AIDS Foundation Chicago who has a global reputation for innovation, is deeply impressed with his home town colleague. “Smart and tenacious, Cassie Warren is an advocate we all should be watching if we aren’t already,” Jim says. “Everything she does is rooted in a strong sense of community, social justice, and human rights. She’s equal parts thoughtful and fierce, and Chicago is so lucky she is here moving mountains!”
“I have felt unsafe for the last two years,” says Bogdan Globa, director of the Ukrainian charitable organization FULCRUM. “We have more radical people and political party. I’m regularly getting threats through the mail and on social media. Sometimes it feels hopeless, but I try to power through to my goals.”
Bogdan has put himself on the line before. In 1993, he became the first openly gay man to make a speech from the parliamentary rostrum of the Verkhovna Rada (imagine a gay men testifying to the Unite States congress). His remarks were candid and deeply personal. “Being an open gay at the age of 16, I went through all kinds of discrimination,” he said in his remarks. “I was bullied and abused in school, I got driven from my own family… I found the strength and courage to go through it, and today I use every opportunity to openly and honestly say to you about it. Unfortunately, a lot of young guys and girls do not find the strength to fight in the Ukrainian reality, and these stories may end with tragedies.”
Bogdan doesn’t want one of those tragedies to be further AIDS deaths, but there are enormous barriers in a country where being publicly gay can lead to humiliation, discrimination, or worse. “We are trying to change the legislation to have HIV testing at home which may attract more gays to know their HIV status,” he says. In 2016, Bogdan is behind plans to launch a home oral HIV testing kit, which he considers a “formidable breakthrough” in getting a handle on the epidemic in Ukraine.
“Bogdan has steadily and fearlessly campaigned for the rights of LGBT community in Ukraine,” says David Furnish, Director of the globally influential Elton John AIDS Foundation. “Most, if not all, improvements in LGBT rights in the last four years can be linked to his involvement.”
When Masonia Traylor tested HIV positive during a routine medical visit in 2010, she was simply shocked. She didn’t feel she was facing her own morality, though, as much as a “spiritual death.” She lived in such a state of anger, at having become infected, at every person she ever trusted, and even at herself as she second-guessed every choice she had made. It was a dark time that produced a surprisingly sunny advocate.
The 27-year-old mother of two has tremendous enthusiasm for her advocacy today, focused on population she relates to: youth at risk. It is widely known that in the United States, an estimated 1 in 5 people living with HIV do not know they are infected. What is less known is that among those living with HIV who are between 13 and 24, more than half do not know they are infected. It’s no wonder Masonia is so passionate about reaching them.
“Equipping youth with knowledge and awareness of the HIV/AIDS epidemic is what it will take to stop new infections,” Masonia says, who devotes her time volunteering for a variety of HIV agencies and maintaining an active presence on social media. “HIV is manageable, treatable, but most of all preventable.”
None other than the formidable Luvvie Ajayi, the social media sensation and founder of the Red Pump Project, believes Masonia has what it takes to deliver a message to young people. “Masonia has turned her pain into power by telling her story so others can know the faces behind the numbers,” says Luvvie. “She is one to watch in 2016 because her work is going to touch more lives and make more impact. I am so inspired by Masonia.”
Longtime HIV activists don’t always slip gently into the background after having made their contribution a generation ago. Sometimes advocates like Rick Rose get a second (or third) wind and re-dedicate themselves to HIV advocacy.
On World AIDS Day in December of 2015, Rick was so inspired by the work of the Philadelphia Center in Shreveport, Louisiana that “I officially recommitted myself to the battle,” he says. Rick has lived in Louisiana for eight years, but his own HIV advocacy goes back thirty years. As director of the AIDS Mastery Foundation in Los Angeles in 1993, he worked hand in hand with the first Miss America to have AIDS as a platform, Leanza Cornett.
“Like many of us living in the throes of the pandemic, I needed a break,” Rick says. “That break lasted 19 years too long.”
Rick is focusing his efforts on the health disparities common in the South, and the impact HIV is having on communities of color. And that means frank conversations. “The South can no longer hide behind congenial traditions and mock religious beliefs,” Rick says. He’s also looking forward to documenting the stories of people at risk in the South through podcasts and other new media.
Miss America 1993, Leanza Cornett, remains a fan and a friend more than twenty years after her reign. “Rick is absolutely one to watch in 2016,” says Leanza. “Even now, he is spearheading round table workshops focused on women of color and HIV. I am so proud of Rick and his work, then and now.”
Wednesday, November 25th, 2015
A variety of gay men spill their guts about their lives and HIV diagnosis. They are bracingly honest, sexually explicit, heartbreaking and hilarious. They are the men of The Infection Monologues, a theatrical event getting a 10th Anniversary staged reading at the Human Rights Campaign this Wednesday, December 2, 2015.
The event is FREE, with food and drinks starting at 6:00pm and the performance at 7:00pm. You can RSVP right here.
Created by the enormously influential gay anthropologist Eric Rofes (Reviving the Tribe), and written by Rofes and writer and advocate Alex Garner, The Infection Monologues provides a snapshot of the lives of gay men living in the epicenter of the crisis, and is based on hours of real-life interviews.
Eric Rofes died far too soon, taken by a heart attack in 2006 not long after The Infection Monologues premiered. Alex Garner has continued a respected career as a journalist and HIV advocate, currently leading a national PrEP education effort for the National Minority AIDS Council.
Alex and I had a chat about the play, the politics of barebacking, gay “respectability,” and putting gay sex back into the social agenda.
First of all, Alex, congrats on having this work of art revived after ten years.
Thanks, Mark. We are excited to be able to breathe life into this script again. I always learn something new when I reread it.
Can I give a shout-out to the late, great, gay anthropologist Eric Rofes, with whom you wrote the play? His book Reviving the Tribe changed my advocacy forever. I recently read it again.
I can’t say enough great things about Eric Rofes. None of this would have been possible without his insight and vision. His impact is ongoing and his books changed me, too.
I invited Eric to lead a gay men’s town hall forum in Atlanta in the mid-1990’s. He was the first person I knew to say publicly that bareback sex was critical to his sexual experience. He said it that night, and it was like a bomb went off in the auditorium. I thought the attendees would riot.
Eric was ahead of his time but such a needed voice about gay sex and gay men’s health. Those early years of the bareback debate were so raw and emotional — no pun intended.
I’m wondering if the themes in The Infection Monologues have remain constant, or if we’ve seen any progress at all…
The themes remain constant in so many ways but the world has changed drastically. The themes of stigma, disclosure, dating/relationships, and sex are just as relevant and compelling today but scientific advancements — treatment as prevention and PrEP — have radically changed the landscape.
I don’t think it feels like something is missing. I think it feels like a specific moment in time. The more things changes the more things stay the same. Much of the stigma associated with PrEP is the stigma associated with condomless sex. The bareback debate has simply evolved because of PrEP and unfortunately some PrEP users utilize PrEP as their shield of respectability: “I’m responsible” or “I’m protected so it’s ok when I bareback.” I have zero interest in respectability politics.
The voices in The Infection Monologues are such complete human beings. Funny, flawed, horny, scared. Tell me the process of how those voices came to be.
Eric was a great researcher and he conducted initial interviews of men who seroconverted after 2000. We used that research, as well as my own lived experience to create the three core characters. The additional characters were developed from writers in Los Angeles who drew from their lived experiences.
I’m all about telling the story of what happened to us — and what continues to happen. But these days it feels like so many of our wounds in the gay community are self-inflicted. Is that a fair observation?
I don’t think that is a fair observation. I don’t like that term. So much of our struggles are still institutionalized, whether it’s around homophobia and stigma, poverty, transphobia and sexism, lack of education, religion, etc. I believe we haven’t focused enough on our resiliency. As a community we endured the worst epidemic in modern history yet the lessons from that seem to be unknown. How did we survive? How did we find community, support, hope? How did we lose or find our humanity and how did we decide they were not going to destroy us. Ours is such a struggle of resistance and I think much of that has been understood simply in the modern marriage equality context.
Some advocates draw a straight line from the AIDS crisis to marriage equality. Do you agree?
I do see a straight line but not necessarily in the same way. The advent of anti-retrovirals allowed us to be healthy, presentable, and respectable. The movement could drop the messy, icky part and the part dealing with our sex, and focus on love and respectability. Strategically it was a brilliant move, but the impact was a desexualized movement. We now have the opportunity to make sex, pleasure and intimacy a top priority of our lives and our politics.
In my everyday life, I’m often torn between wanting to “tell the story” at every opportunity of what happened to us, and thinking I should just shut up already. Something about the trauma we experienced comes back to me, in some way, every damn day. So of course, the choice is to keep talking.
Who are we if not a collection of stories? That is art at its core and for those of us who have been marginalized, stories are a way to exert our humanity.
I’m honored I get to read the role of the “older” gay guy in the play. Actually, I’m actually older than the older gay character I am reading. Don’t get me started. I’ll use concealer that night.
(laughs) The “older” gay man is a very important perspective in the epidemic especially because he seroconverted after having lived through the war years. So much great complex emotion there.
Congratulations, Alex. It’s nice having a dialogue about the monologues.
Thanks. And I hope that others will explore creative ways to tell the stories of our complex and fascinating community.
Tags: aids, barebacking, culture, gay, hiv, physical, politics, PrEP, Recreation, Sexuality, testing
Posted in Anita Mann and Acting Gigs, Gay Life, Living with HIV/AIDS, My Fabulous Disease | No Comments »
Wednesday, October 7th, 2015
My discomfort began as I sat in front of my web cam, waiting to join Danny Pintauro in a segment on Huffington Post Live. Danny had recently announced on an Oprah special that he was living with HIV, which was big news for fans of “Who’s the Boss?” and those who loved the precocious little boy Danny played. Before my virtual entrance, Danny was telling host Nancy Redd how he was infected with HIV.
He wanted to explore “rougher sides” of his sexuality, he explained. And wouldn’t you know it, the first guy he hooks up with for that purpose offers him crystal meth. “And you combine meth, which completely ruins your immune system,” he said earnestly, “you combine having been up a good 12 or 13 hours… you combine that with some rough but safe sex, believe it or not, and it’s just a potent combination.”
My jaw dropped. Did Danny Pintauro just attribute his HIV infection to using meth and being tired? Did he just say that he had safe sex, “believe it or not?”
No, Danny. I don’t believe it. While gay meth addicts are many times more likely to test HIV positive, it is because they engage in high risk behaviors, specifically unprotected anal sex, and not because they missed a good night’s sleep.
Danny went on to explain, or at least presume, that his sex partner’s viral load “had to have been very high, because that’s the easiest way to contract it if you’re not being unsafe.”
I was incredulous. I began to mentally prepare retorts to the celebrity. If you are not being unsafe, Danny, you will not become infected with HIV, regardless of your partner’s viral load. Prevention is a two-way street. Your partner posed no threat to you if you were being safe, which you say you were. Which is ludicrous because you were high on crystal meth, a sex drug known for evaporating condoms instantaneously. Statements like “we were safe, believe it or not” would be pure comedy gold at any Crystal Meth Anonymous meeting.
But I actually said nothing to challenge his statements. When I appeared on the segment a few minutes later, I welcomed Danny to the world of poz activism and identified myself as a fellow meth addict in recovery. I then threw out an inane softball question to our newly-minted HIV positive celebrity/cautionary tale, because, well, he was on a popular sitcom and has the power to reach a lot of people. And because I totally wimped out.
We don’t always get the spokesperson we want. We have to work with the celebrity we are dealt (ask any transgender activist in this Year of Caitlyn). And it’s unfair to expect a random person with a celebrity past to be conversant on every aspect of HIV important to us. Besides, Danny’s messaging around meth and gay men alone is worthy of our gratitude.
It is also true that Danny has set himself up for criticism and public judgments. In a universally vilified segment on The View, one of the hosts, a breathtakingly clueless idiot named Candace Cameron Bure, challenged Danny to “take responsibility” for his actions, as if she had just nabbed an interview with the latest mass shooter.
If that was your last exposure to Mr. Pintauro, you’re probably feeling for him about now. So was I. That is, until he doubled down on his “I had safe sex” statements by telling US Magazine that not only had he been a condom-loving crystal meth addict, he was actually infected through oral sex.
I better take a breath here. Ahem. Okay. Moving on.
There’s no way to know the level of shame Danny Pintauro may be feeling around his addiction and HIV infection. And he must sincerely value his beloved place in television pop culture and hate to discolor it with his personal revelations. That took courage.
But attributing his HIV infection to the infinitesimal risk of oral sex – because God forbid anyone picture the former child actor taking bare dick and semen up his ass – isn’t the kind of transparency needed for a gay, HIV positive spokesperson.
And then, oddly, Danny added in his US Magazine interview that the “irresponsible” man he believes infected him over a decade ago — whose name escaped Danny for many years – has been on his mind and he has been trying to find him, even searching through obituaries and what-not.
Danny’s strange fixation suggests a blame game that goes beyond Danny’s assertion that he wants to be sure the guy “is okay.” Let us all hope that the man in question is living a healthy life somewhere, safe from Danny’s well-intentioned but pointless quest to contact him.
That man deserves his privacy at least as much as Danny Pintauro deserves his rocky, vexing media tour.
Tags: acting, advocacy, barebacking, culture, gay, hiv, recovery, Sexuality
Posted in Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | 16 Comments »
Wednesday, September 30th, 2015
For more than a decade I was an active crystal meth addict. They were the darkest years of my life.
I suffered numerous relapses as I struggled to get clean, and my woeful journey back to crystal meth was always the same. First, small changes crept into my behavior; not about crystal meth precisely, but vaguely related habits that had once accompanied my active drug use would begin entering my routine again.
A return to the gym and a shallow fixation on my body. An abandoned cigarette habit that returned in secretive fits and starts. A feeling of entitlement—to do as I pleased, to eat junk or rejoin the lurid party scene—swept over me like a declaration of freedom that hid its true intentions in the fine print.
And then the clarion call became more explicit as involuntary images of using drugs bombarded me, plaguing my sleep and my daydreams. The images became ever more seductive, promising euphoria and an escape from my own feelings.
But the most formidable thoughts that drew me back to active addiction were always about sex.
It feels ludicrous to me now. The sex life of a meth addict is as compulsive as it is pathetic. The drug ignited an obsession I had never known, taking my authentic sexuality and twisting it into something unrecognizable to me today. It was a constant pursuit of sex partners, naked video chats, pornography, and increasingly extreme and dangerous behaviors that lasted days and weeks at a time. It was an endless loop of desire and disappointment, played out over many years.
Incredibly, I believed the allure of hot sex was worth the consequences that piled up. Visits to the emergency room. An arrest. The company of psychotic and paranoid addicts. Weapons pointed in my direction. I simply wasn’t capable of seeing the wreckage for what it was.
Throughout my years of addiction, and even during my recovery process, I couldn’t help but wonder why. How could an intelligent and otherwise healthy man turn his life over to such a pitiful existence? What was going on in my mind?
Therapist and addiction specialist David Fawcett (right), in his remarkable new book, Lust, Men and Meth: A Gay Man’s Guide to Sex and Recovery, answers these questions and many more about the nature of addiction and the stubborn link between crystal meth and sexual compulsion. I cannot tell you how reassuring it was for me to read that there are physiological reasons for my addictive behaviors. There is comfort in knowing I am not alone in the mental changes that happen to crystal meth addicts, and that these changes are reversible.
I recognized myself on page after page of this book, including the fusing of sexuality and meth addiction, the stumbling blocks of recovery, and the deep and sometimes crippling shame that haunts active addiction and the recovery process.
Most importantly, this book maps a way back to normalcy. I am grateful to say that I recognized myself in these chapters as well, as the slow but steady process of rebuilding my brain took hold during my first years of solid recovery.
Whether you are a health care provider, the loved one of an addict, or are questioning your own addictive behaviors, this book reveals the most personal—and therefore, the most shame-filled—aspect of crystal meth addiction, and it provides guidance for a way out. Make no mistake, there is joy, engagement, and a worthwhile sex life on the other side of crystal meth addiction.
I am happy today. I am in a committed relationship that is rooted in honesty and has none of the selfishness and deceit with which I conducted myself during my dark and treacherous decade. Despite fears that my sexuality had been irreparably harmed, my sex life today is healthy and rooted in affection, love, and mutual care.
There are many avenues of recovery, but the science of addiction is always the same. This book outlines that science, while revealing the stories of addicts who, like me, have questioned if their sex lives might ever be the same again.
Thankfully, the answer is yes.
(This is an edited version of the book’s Foreward, which I was honored to write. I not only recommend this book, I urge you to share it with someone you know who may be struggling. You can purchase it here.)
Tags: culture, gay, help others, hiv, meth, recovery, Sexuality
Posted in Book Review, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | 5 Comments »
Wednesday, September 23rd, 2015
When Miss Florida 1992, Leanza Cornett, competed for the crown of Miss America 1993, she didn’t just have gay hearts aflutter over our love for pageant competitions. We adored her because she proudly chose an AIDS awareness platform — and she meant it down to her lovely bones.
My interview with the groundbreaking title-holder is proof that, more than twenty years later, she is as feisty as ever. Our chat includes her HIV advocacy memories, some backstage dish from the pageant, recovery, sex, her love for the gays, and whatever happened to that jeweled, delicate crown.
Tell me about your exposure, as it were, to the AIDS crisis prior to becoming Miss Florida in 1992. Was it already on your mind?
The first time I heard the word “AIDS” I was 11 years old. It was 1982 and I heard a newscaster say the word and what I remember most was that it was a disease that was killing people. I was in my very small Appalachian hometown of Big Stone Gap, Virginia, and I went into full panic mode because I had eaten almost an entire box of what I thought was candy, called “AYDS” at my grandmother’s house. (AYDS was a chocolate diet suppressant, I found out later). So, as an 11 year old, I thought I was surely doomed. Fast forward, as years progressed so did the disease and thankfully so did our knowledge. When I was 16, I began working professionally in theater and met someone living with AIDS, an actor and a friend. Suddenly, the news story had a face, a name and a relationship with me.
During 1991, the year you were crowned Miss Florida, nearly 30,000 people in the US died of AIDS, and it was the leading cause of death among those age 24-44. It’s sometimes easy to forget the nightmare of those statistics.
By 1991, I was volunteering at two different places in Florida. Hope and Help, was an HIV service organization in Orlando. I did everything from answering phones to taking clients to doctor appointments. That’s where I met Guy Carswell, who became my best friend. I took him to appointments where he would have his Karposi Sarcoma (KS) lesions frozen off. I left every appointment with him in tears but also feeling incredibly empowered that the doctors were making strides toward a cure.
I saw an article in the Orlando Sentinel about a couple who had decided to take in foster children that were born with HIV. Jim and Charlene White turned their home into a non-profit organization called Serenity House and I began volunteering twice a week, taking care of those sweet children. Some were newborn infants and a few were toddlers. It was that year that I competed in Miss Florida and won. So yes, it was very much already on my mind and a huge part of my life.
Was AIDS your platform for the Miss Florida pageant?
No, and I regret that. I listened to people who said I’d never win, it was too controversial. I always felt like that was a compromise I should never have made. But, in the long run, if it had been something standing in the way, I may never have had the national platform I ended up with. Funny how things work out.
I had decided to champion AIDS as my cause going to Miss America no matter what. I met with the Executive Director of Miss Florida and told her and the rest of the Board that it wasn’t an option for me to do or speak out for anything else. The Florida board and everyone I worked with supported me wholeheartedly. I was surprised, simply because in 1992 the only people you heard about as activists were groups like ACT UP.
I absolutely must know about the final moments, among the finalists, before you were crowned and when you name was called as Miss America 1992. Please, spare no emotional detail! I live vicariously for this sort of thing.
I knew I was going to make Top Ten at Miss America, not because I was super egotistical or clairvoyant, but because a hairdresser had seen the list and I was on it and she told me. I even knew where I was in the placement — number six. So I was pretty thrilled with just that alone. Once I made it to the Top Five and I got to speak and answer questions about my platform on stage, that was the cherry on top. For me, personally, that would’ve been enough.
Thank God for video because I honestly don’t remember those final moments except for what I witness in watching it back now. I remember saying to Miss Iowa (Cathy Herd) that she would make a great Miss America. Everyone thought she would win — she was a double preliminary winner. I remember when Regis Philbin announced me as the new Miss America that it must be a mistake. I was wearing white gloves and I remember thinking that they were borrowed and I didn’t want to get makeup on them when I wiped my tears. I thought about the boyfriend who’d broken up with me and hoped he and his whole family were watching. I was just stunned. Completely stunned. Have never been so shocked in my whole life.
Hold on one minute. Your boyfriend broke up with you before the pageant? Is the best revenge winning Miss America?
No, he broke up with me my first year of college, and funny enough, we’re still friends today. But he broke my heart and I wanted to see him squirm, that’s for sure.
I happen to have a sash and crown in the back of my closet, for the 2015 Miss Summer Serenity Pageant, a camp drag thing they do in Washington to benefit people in recovery like me. So, take that. I didn’t cry when I won, I was very regal. Although those sharp stays in the crown were killing me.
I love it that you have a crown and sash…everyone in recovery deserves that but I’m especially glad you won!
Are contestants by and large sincere and gracious behind the scenes, worse, or somewhere in between, like all of us?
I think by the time most contestants get to Miss America, the catty ones have been weeded out. Girls are girls just like gays are gays (laughs) but it’s kept in check during pageant week. It felt less like a competition and more like putting on a great show. I’m still friends and communicate often with several of the girls from my year.
I know gay men who can rattle off former title-holders, their states, and what color they wore for swimsuit. I remember actual squeals coming from my gay friends when we saw you backstage at the Shanti Tribute to Peter Allen in 1993. We’re talking high-pitched sirens of delight.
I’m very, very proud to have been able to speak out on behalf of People Living with AIDS and gay men who probably suffered the most, especially during those early years. I think I confused the lesbians, because they typically hated Miss America, but loved anyone who stood up for AIDS. I was a conundrum!
Of course, your appearance at that event for Shanti was a bittersweet moment for me, as you know I have written about. You accompanied our founding director, Daniel P. Warner, to the event, and he was covered in KS lesions. You handled yourself with such graciousness toward him, holding tight to his arm.
Because I was so closely involved as a volunteer prior to ever winning, I felt really comfortable with a hands on, no-holds barred approach. I was criticized and questioned many times along the way. I remember I was photographed at a hospital kissing a child who was HIV positive and it made the front page of the paper. I got so much mail over that!
Thanks for referring to us as “people living with AIDS” during that time. You know your language.
I was reading an article published in People Magazine about the AIDS epidemic and the journalist kept referring to the people she was profiling as “victims.” I wrote a letter to People, correcting the journalist and explaining how important it was to write about “people living with AIDS” as opposed to victims. They published the letter, and a few months later I was in attendance at a Ryan White Awards banquet and Greg Louganis was a speaker. He cited my letter to People and thanked me for standing up for PLWAs. It was a God-shot for me, proof that standing up and speaking out reaches to so many places.
Speaking of God, you’re a woman of faith, and so many people with AIDS were traumatized by some of the rhetoric by religious fundamentalists during the early years. I’m thinking Jerry Falwell, for instance. How did you reconcile that, or explain to conservatives the importance of ministering, in the truest sense, to those living with the disease?
Great question. Well, I don’t know anyone who hasn’t been traumatized by religious fundamentalists at some point, no matter if it had to do with AIDS or anything else. I definitely felt the sting of that while I was in the thick of advocacy. Thankfully, I have a lot of Biblical training and knowledge, and anytime I felt I had to reconcile anything, I could always refer to the love, the merciful love that Christ shows to all of us. I understand that even more, in recovery, because that gift of powerlessness — knowing that we can’t control what people think or say or believe — it’s very freeing. The most important thing is to love, to show tolerance. I recall telling a minister once, when he criticized me about how vocal I was, that perhaps he should just pray for me and leave the rest to God.
It feels like we still get hung up talking about sex even today, which only benefits the spread of HIV, yet you were teaching people how to use a condom 25 years ago. Is our reticence about sex still the biggest obstacle?
I think we’ve certainly come a long way when it comes to talking about sex, and sexuality. As a parent now, I think the biggest obstacle is knowing when to have an open discussion with kids, because they are much more open minded about almost everything — race, gender issues, sexuality, differences. I think it’s incredibly important to have age appropriate, honest conversations with children as early as possible. This helps them grow into tolerant, open minded adults, which is what the generation before ours, and our own as well, missed out on. I also think that adults need to be exposed to that same honest talk, through schools, clubs, churches… Talking about sex has never scared me, but the results of NOT talking about it absolutely scare the hell out of me.
You were part of the ceremonies when the entire AIDS Quilt appeared on the Ellipse in Washington, DC, in 1992. I still can’t walk through a display of the quilt without losing it. What kind of impact did it have on you then?
Oh my goodness. That was one of the most powerful moments I’ve ever experienced. I traveled quite a bit with the Quilt and worked so closely with NAMES Project. Yes, the impact stays with me.
Did you make a panel?
I did make a panel for Guy when he passed. It still remains one of the most emotionally charged and difficult thing I’ve ever done. Labor of love doesn’t even begin to describe it.
How do you feel about the arrival of pre-exposure prophylaxis (PrEP), the pill that prevents HIV infection? For me, it’s the kind of thing we prayed for back in the day, but the uptake among those at risk of infection has been slow.
Wouldn’t the landscape of the disease be so very different if that had been available “back in the day?” I know I would take it, and I would encourage anyone who’s sexually active to do the same. I think any kind of shame in taking a preventative pill would pale in comparison to the possible ramifications for not taking it. That’s not to say that there should be ANY shame in contracting and living with HIV/AIDS. Men and women who I respect, admire and love with all my heart are living with the disease, but would, I’m pretty certain choose not to if they could.
You’re in Florida now, hosting a morning show called The Chat. How’s life today, and does HIV advocacy still have a presence in it?
Life is so good. I’m on a leave from the show for now, so I can spend some time with my two boys and family in California, but I’ll be back! The show is formatted like The View, with very opinionated, funny, smart women and it’s really fun and informative, too. I stay involved with HIV/AIDS organizations. I don’t have the national platform like I did in 1992-93 but whenever I’m asked to do anything, I say yes. I advocate as much as I can and will for as long as people remain uneducated and people living with HIV/AIDS are ignored or mistreated.
Many gay men like myself can take a kind of bittersweet pride in having stepped up at a time when it felt like the world had turned against us. And you were our ally when you didn’t have to be. I hope you still take a lot of pride in that.
I really do. And thank you. It’s one of the best decisions I ever made to step into the ring and fight with all of you, gay and straight alike. I’m so proud of what we have accomplished and continue to accomplish. It isn’t lost on me that I was, as Miss America, invited into places that other activists weren’t. Churches, schools, Rotary Clubs, private organizations, the White House. I am so very proud to have been able to use my title to make a difference and have the absolute time of my life doing it. The friendships that were born through advocacy are some of the most important and meaningful relationships I have. I worked with some real rock stars. I’m very grateful.
When was the last time you put your Miss America crown on? If you haven’t done it in many years I am going to be really disappointed.
Honey, every time I vacuum that crown is on. Haha! No, actually I put it on while doing The Chat last year. It’s here in California with me now, and since you mentioned it I may just have to put it on today just for fun.
Oh yes, please. You know I love you for that.
Ironically, my producer on the show put it on and broke it! It was so funny. She was mortified. So, a little super glue and it’s all good.
Lucky for us, your spirit is unbreakable. Thank you Leanza, for so many things.
And thank you. Your spirit and passion is contagious and inspiring. I mean that.
I inspire Miss America! I’m telling everyone. Take care, and think of me when you vacuum.
You take care as well, and thank you!
(Crowning photo from Miss America 1993 DVD; Portrait photo courtesy Miss America pageant; Photo of Daniel P. Warner and Leanza Cornett by Karen Ocamb; present-day photo by Renee Parenteau Photography)
Tuesday, September 15th, 2015
Not to get all southern gothic on you, but I depend upon the kindness of strangers. Especially when producing video blogs at conferences.
“Excuse me, would you please just hold this camera and point it at me while I talk to these people?” I must have said that sentence at least 40 times during the United States Conference on AIDS (USCA), held recently in Washington, DC. Every single interview you see in my video blog below was shot by whomever was wandering by at the time. Thanks, y’all!
The video contains three AIDS czars, one stripper pole, a ferocious batch of trans protestors, and more inspirational front-line workers than you can shake a stick at. My congratulations to the National Minority AIDS Council for their famously creative production of the weekend.
The spirit shared by the advocates, healthcare providers, and organizations who convened for USCA was electrifying, and just the boost many of us need to keep our energy up and our dedication renewed.
Oh, and special thanks to the CDC’s Act Against AIDS campaign for letting me take over their Instagram page during the conference (follow them here), and to Gilead Sciences for sponsoring the “Mind the Gap” session on social media and inviting me to host it.
I love what I do. I love the work you’re doing, too. As always, you are welcome to re-post my content, share it, take the YouTube video above and post it within your page, whatever might help share the messages of this amazing event and the awesome people who attended.
Thanks, my friends, and please be well.
(The photo above was the selfie the Social to Mobile speakers took at the end of our session, and includes – left to right – YouTube star Davey Wavey, blogger Guy Anthony, Michelle Samplin-Salgado of AIDS.gov, Luvvie Ajayi of the Red Pump Project, Miguel Gomez of AIDS.gov, myself, and Michael Crawford from Freedom to Marry.)
Tags: advocacy, aids, conferences, criminalization, culture, gay, help others, hiv, physician, politics, PrEP, recovery, research, serosorting, Sexuality, testing
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 6 Comments »
Wednesday, August 26th, 2015
When Alana Oldham was only 17 years old, she found out the meaning of activism. A close friend had received an AIDS diagnosis and he wasn’t expected to live very long. Alana wanted to take action — to make a difference and vent her grief and frustration — but there were two major obstacles in her way.
It was 1989, and she lived in Shreveport, Louisiana.
“I had to do what I could to help my friend,” says Alana. “What was happening was cruel. People were discriminated against everywhere. Another friend of mine was fired from his job for having AIDS.”
And so, Alana Oldham did something in Shreveport that many people assume was only possible in much larger cities. She accepted an invitation from founding member Debbie Allen to attend an ACT UP meeting, one of the first to be held by the fledgling Shreveport group. And very soon thereafter, Alana took to the streets of her southern home town as part of angry protests. (Alana in 1990, above center.)
Robert Darrow, a founding member of ACT UP Shreveport, was right by her side. After years away from home, living in New York City and dealing with his own AIDS diagnosis, Robert had returned to Shreveport to die near his family. Instead, his health stabilized as he took part in a small town revolution.
“We were an angry bunch of young people,” Robert said. “We were angry at local doctors for turning us away. We were angry at judgmental families. Even at the only local clinic that would treat us, they installed an exhaust fan to get rid of the air we breathed.”
The group of activists were stunningly effective, showing up regularly on the front page of The Shreveport Times and on local television, and leading to the formation of an HIV clinic and a community-based AIDS service agency, The Philadelphia Center.
ACT UP New York activist Peter Staley (profiled in the Oscar-nominated documentary How to Survive a Plague) recalls taking notice. “I remember the thrill we got in New York when we heard about the launch of ACT UP Shreveport,” he said. “We had breached the Deep South!”
But not everyone in Shreveport was a fan.
“Even people in the gay community wanted us to go away,” said Robert. “They thought we were appalling.” Robert believes it was more difficult for ACT UP Shreveport to speak out than activists elsewhere, citing the hugely conservative majority in Louisiana. The disapproval of in-your-face activism also mirrored the self-hatred felt by so many gay men living in the Bible Belt.
David Hylan was one of those men. Married and closeted at the time, David watched ACT UP from the sidelines. “They were scary,” he said. “The radical nature of it was off-putting, especially since the south found all gay people immoral. And now there was this deadly disease.”
David realizes now that his discomfort had as much to do with his own masked sexuality as it did with the angry street activists he saw on the local news.
So it feels satisfyingly, poetic even, that David is now co-producer of Small Town Rage: Fighting Back in the Deep South, a documentary in the works about the history of ACT UP Shreveport. The film features interviews with many of the surviving activists and with family members of those who were lost to the epidemic.
A new Kickstarter campaign has already raised one-third of the project’s $15,000 budget. Dozens of hours of interviews have been filmed, and funds raised will cover remaining production costs and efforts to feature Small Town Rage at film festivals. Tom Viola, the influential head of Broadway Cares/Equity Fights AIDS, has issued a personal appeal in support of the project on his Facebook page.
“This whole journey has been a learning experience,” said David Hylan. “I’ve come to appreciate the people who were just fighting for their dignity.” His personal evolution led to a second marriage earlier this year, when David married his boyfriend.
The Philadelphia Center in Shreveport, forged by the efforts of ACT UP, remains the only HIV service provider in northern Louisiana.
Robert Darrow, the ACT UP member who had gone home to die and helped form ACT UP instead, served as The Philadelphia Center’s first executive director. Robert says that of all ACT UP Shreveport’s accomplishments, he is most proud that the agency serves thousands of clients. And there’s something else that gives him pride.
“I’m proud we did not remain silent,” he says.
(Visit the Small Town Rage site and consider even a modest token of support. I pledged $25 but any amount is welcome. Stay up to date on the film’s progress through their Facebook page or Twitter feed.)
Tuesday, August 18th, 2015
Any campaign that blends living with HIV with a sense of empowerment and joy always grabs my attention. Stigma remains one of the most damaging forces in our struggle to both combat new infections and support those of us with the virus.
Australian Nic Holas 33, co-created the social and advocacy platform for people living with HIV, The Institute of Many (TIM) only weeks after he tested HIV positive in 2012, and it nurtures exactly the kind of peer support that so many advocates find the most effective.
And now, TIM has launched The Wizards of Poz, a social media campaign that celebrates people living with HIV who are taking charge of their lives.
Nic and I spoke about his Wizards of Poz campaign, the Aussie epidemic, “glamorizing” HIV, and a certain sexy monkey.
So, Nic, you’ve taken one of the most iconic films loved by the gays… and made it gayer. That’s no small feat.
Thanks! It was so much fun. The campaign all started from a joke that Jeff Lange (TIM’s American-based co-founder) and I had – namely that I was the Wicked Witch of TIM who stirred trouble, and he was the Good Witch who would just float down every once in a while, smile and leave! When we started to dream up what the campaign looked like, we wanted to extend that image to other members of TIM, and honor their contribution – as well as send a new message to the wider HIV community.
I also like the playful way in which you take subcultures such as queers, radical fairies, sissies, and leather queens and make them something to be exalted and enjoyed.
Those subcultures exist, and they’re all valid! With this campaign, we’re trying to celebrate all the diverse ways queer culture presents itself, in a way as a reaction to the pressure for us to “be normal” at the moment.
I love that a woman is the lioness.
It was so important to me that Abby Landy be our lioness. Positive women are very underrepresented in Australian media depictions of poz living, or when they are, it’s often a betrayal/victim narrative. Abby has been very brave to step into the spotlight to tell her story, and I thought turning her into the anything-but-cowardly lioness was a fitting tribute.
How are racial demographics different down under? Here in the United States, including people of color in campaigns like this is important.
This is something that was a bit of a struggle. I could see when I was amassing our “cast” that it lacked diversity. I wanted to pay tribute to the TIM members who had put themselves out there in the media for TIM, but what that has helped me realize is what sort of narrative the media is looking for in Australia, or rather which narratives are being excluded. We have a burgeoning population of Sub-Saharan African migrants and refugees in Australia, plus Asian international students and migrants, and of course our Aboriginal and Torres Strait Islander First Australians. Those communities and their experiences with HIV need to be honored.
I laughed but wasn’t a bit surprised to see Theodore, my hottie Aussie cameraman from my video reports at AIDS2014 in Melbourne, half naked and on his hands and knees! Thank you for completing the Theo fantasy shared by most everyone who meets him.
Ha! It’s an honor and a privilege to find ways to bring Theo’s bare ass to the world.
In the materials for the campaign, you speak about “paying rent on our privilege to be HIV+ in Australia in 2015.” I like the throwback to those who came earlier, and the sense of gratitude for our lives today. Tell me more about that.
“Paying rent on our privilege” is one of TIM’s core beliefs. The movement started because Jeff (the Good Witch) and I weren’t that knocked about by our diagnoses. For me, that meant that I owed it to the ones who fought and worked to give us that freedom, and to those diagnosed alongside us who still consider HIV to be a life-limiting event (not to mention of course the millions of PLHIV around the world who cannot access treatment, who are criminalized, and discriminated).
And oh my dear, you have to paint me a picture of what the photo shoot was like. I imagine strange colors and fur and feathers and exposed skin all over the place. And a lot of laughs.
Oh God, the shoot was ridiculous! I’ve done my fair share of wild shoots in the past, and I knew how long things take and how mad it can get. This is the first time though I’ve had to art direct something while being painted Wicked Witch green! The incredible thing was that practically everyone on the shoot was HIV+, and if they weren’t poz they were dating someone that was and got roped in to help! It’s a testament to the creative power and community spirit of the poz universe.
Have you had any negative reactions to the campaign?
Some people have criticized the campaign saying it glamorizes HIV.
Oh. That again.
It’s ridiculous. The campaign glamourizes HIV+ people. And why shouldn’t we feel glamorous and fuckable and hot? If you can’t tell the difference between making poz people feel good about themselves and making HIV seem “attractive,” then you can’t see us beyond our status. And that makes you a pozphobic fool.
What is the state of the HIV epidemic in Australia, by the way?
There are approximately 26,000 people diagnosed with HIV here. One of the leading responses has been needle exchange programs and sex worker empowerment, which means gay men are the main affected population (not the only one, of course). There are virtually no AIDS deaths any more due to treatment uptake in the 90% because of universal healthcare. So, we have the luxury of focusing on stigma.
As progressive as Australia is, many people will be surprised to learn that pre-exposure prophylaxis (PrEP) isn’t available there.
PrEP isn’t an inevitability here. Truvada still needs to be approved for use as PrEP, then put on something called the PBS (Pharmaceutical Benefits Scheme) so anyone can access it. It is still two years away, at least.
Is TIM limited to those in Australia? There may be people elsewhere who see this campaign and want to join in the online social support you offer.
The TIM group is global! It’s all back to the “paying rent on our privilege” thing. The TIM digital space (a private group on Facebook) not only lets people find community, it can put our HIV into perspective. As I’ve had to say in the past, “TIM wasn’t set up to help you, it was set up so we could help each other.”
That’s great. If the FB group is private, how might people who read this story join the group if they are interested?
Thanks for this work, Nic.
(Campaign models are all members of The Institute of Many, and include Sebastian Robinson as Scarecrow, Dean Camilleri as Tin Man, Charlie Tredway as Dorothy, Jeff Lange as Glinda, Theodore Tsipiras as Winged Monkey, Abby Landy as the Lioness, and Nic Holas the the Wicked Witch.)
Monday, June 29th, 2015
Sometimes it’s helpful to get back to basics, and there is no more basic, effective tool to fight the HIV epidemic than to encourage testing. How long has it been for you, my friend? Here are five important facts about HIV testing that I hope will convince you to get busy and get tested — again.
1. You could be HIV positive and not even know it.
According to the Centers for Disease Control (CDC), one in eight people with HIV in this country don’t know they have it. Some estimates are higher. With 50,000 brand new infections every year in the United States, it is absolutely crucial that you know your status.
2. Knowing your status is one of the very best ways to stop the epidemic from growing.
No matter your HIV test results, taking the test means you are already doing your part to protect yourself and others. If you test negative, you will know you haven’t put anyone at risk – and it will probably encourage you to keep making smart decisions. It might also be the wake-up call you need to re-assess your risks or to consider pre-exposure prophylaxis (PrEP), a medication proven to greatly lower your chances of becoming infected.
If you test positive, you can take advantage of a variety of medications (with fewer pills and side effects than ever) that can reduce the virus in your body to undetectable levels. Science has proven that people with HIV who have an undetectable viral load are not transmitting HIV to their partners. Getting people with HIV to undetectable levels is a huge factor in slowing the epidemic–not to mention keeping your own body healthy and ready for more action.
Yes, getting testing can be scary. But so is having HIV and not treating it. Ask any gay friend who survived the 1980’s, when there weren’t effective medications. It wasn’t pretty.
3. An old HIV test result is even worse than an outdated Grindr photo.
When was your last test, and how many risky things – unprotected sex, drug or alcohol use, wild nights out – have you done since then? Being confident of your status is about being consistent.
The CDC recommends an HIV test for everyone between the ages of 13 and 64 as part of routine health care. For those at higher risk – that would be gay men like me and those with drug addiction histories – a test at least twice a year is recommended, especially if your bedroom dance card has been full or you’ve been partying.
4. Getting tested is easier than ever, and you have plenty of choices.
Boys, do you have options. Choose one and get ‘er done:
- Visit Get Tested and enter your ZIP code.
- Text your ZIP code to KNOWIT (566948), and you will receive a text back with a testing site near you.
- Call 800-CDC-INFO (800-232-4636) to ask for free testing sites in your area.
- Contact your local health department or HIV service agency.
- Get a home testing kit (the Home Access HIV-1 Test System or the OraQuick In-Home HIV Test) from a drugstore.
5. Everyone can make a difference. We can stop HIV together.
Offer to go with a buddy to support him emotionally as he gets his results. Get tested alongside that sexy beast you’ve been seeing. Ask friends about the last time they took the test.
You could go the extra mile by sharing this article. Or visit the Act Against AIDS page for free materials, ads, videos, and banners you can share online.
Tags: advocacy, barebacking, gay, hiv, physical, physician, recovery, Sexuality, testing
Posted in Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, Prevention and Policy | No Comments »
Thursday, June 25th, 2015
(I was proud to join four fellow activists contributing to this story, which originally appeared on the site HIV Equal. If you have ever wondered what all the fuss is about — or think the conflicts activists have with AIDS Healthcare Foundation are just industry “inside baseball” — here are ten reasons to believe otherwise.)
You would think that the largest global HIV and AIDS service organization with the biggest budget a non-profit could ask for would be interested in removing the stigma of HIV and working in unison with people living with the virus. But even a passing glance at AIDS Healthcare Foundation’s (AHF) record of offenses against the community it claims to serve says otherwise.
It is unfair to color the efforts of the people of AHF as categorically corrupt. The massive organization is staffed with thousands of wonderful, passionate, and well-meaning people who are unfairly criticized and whose work is slighted. There are fantastic doctors and wonderful programs that do a great deal of good under the AHF brand, but this does little to remove the stains created by the poor leadership and direction of one man: Michael Weinstein.
In the past 15 years, Weinstein has racked up quite the record of wrongdoings against the collective effort to reduce HIV transmission and stigma. Well known HIV activists Peter Staley, Mark S. King, Eric Paul Leue, Mathew Rodriguez, and Tyler Curry assembled a list of the top 10 worst offenses of AHF by way of Weinstein.
1. Anti-Union Practices
In 2013, when AHF medical doctors were overworked in understaffed clinics, they felt that the quality of patient care was being ignored and wanted to unionize under the National Union of Healthcare Workers. Medical staff told the Los Angeles Times that decisions were driven by concerns for profit, not patient care, but AHF said that they considered doctors “management,” and Weinstein said any efforts to unionize that included doctors were “tainted.
If AHF or Weinstein did deny its doctors the right to unionize, AHF squarely falls not only against its own medical staff, but implies that it does not want its clients to have the highest standard of care – deliberately shunting the health of HIV-positive people onto the backburner. — Mathew Rodriguez, HIV activist and community editor of TheBody.com
2. Paid Editorials Campaigning Against PrEP
I guess its good to be king, because no matter how skewed your opinion may be, your dollar will always get your words published. On June 16, 2015, Weinstein paid to distribute his most recent editorial ad campaign, “The War on Prevention.” Although AHF’s stance has changed significantly since the days where the organization called the pill a “party drug,” Weinstein still trumpets the use of condoms over PrEP as the only effective large-scale measure of preventing HIV transmission.
“AIDS Healthcare Foundation is not against PrEP,” Weinstein writes. “Truvada can absolutely be the right decision for specific patients who, in consultation with their doctors, decide this is the best choice. However, the entire body of scientific data demonstrates that Truvada will not be successful as a mass public health intervention. Yet, this is exactly what PrEP advocates, including the Centers for Disease Control and Prevention, recommend.”
To clarify, the CDC is not in the business of PrEP advocacy, but rather scientific research. There are no specific scientific claims that Weinstien tries to disprove in the “advertorial.” But he does give plenty of unsubstantiated statements himself, such as, “Mass PrEP administration is a dangerous experiment that is not supported by medical science and is currently resisted by doctors and patients alike.”
Sounds scary, huh? It is also bullshit. Yet, this advertisement ran in LGBT newspapers and magazines in eight markets nationwide (Chicago, South Florida, San Francisco Bay Area, Washington D.C., Seattle, Dallas, New York, and Los Angeles). — Tyler Curry, HIV activist and senior editor of HIV Equal Online
3. Anti-Science AIDS Activism
AIDS treatment activism has a beautiful legacy, built by groups like Project Inform, ACT UP New York, Treatment Action Group (TAG), and South Africa’s Treatment Action Campaign (TAC). Collectively, we’ve helped change the course of AIDS, and saved millions of lives. One of our central tenants is that science should drive our advocacy. Science has been our compass, and our source of credibility and power to do the most good for the most people. Science has kept us from letting the personal dogma of any single activist steer the movement in a harmful direction.
Michael Weinstein has been spitting on this legacy for almost 15 years, long before he launched his PrEP denialism campaign. He has been spitting on the graves of lost heroes, like Martin Delaney, Project Inform’s founder, who warned me years ago that Weinstein was “dangerous” and “self-serving.” He has been spitting on the graves of Spencer Cox, and Carlton Hogan, who were instrumental in pushing us towards a science-driven path. Some of us should be forgiven for feeling protective of the legacy of AIDS activism built by these fallen comrades, and for our anger at those who arrogantly rebuke it. — Peter Staley, HIV activist and founder of Treatment Action Group (TAG)
4. Stigma-Fueled, Anti-PrEP Messaging
In April 2014, Weinstein called Truvada for PrEP a “party drug,” that would give gay and bisexual men a license to have unprotected sex, which would lead to a “public health disaster.” Weinstein’s “party drug” comment is disrespectful to anyone who has ever had sex — or plans to. Firstly, calling any HIV medication a “party drug” is disrespectful to HIV-positive people who take the drug in order to suppress the virus and live fully realized lives.
The sex-negative comment, borne of internalized homophobia, shames people of all sexualities who derive meaning from sexual activities — whether natural or with a condom — and is an ultra-conservative attack on (generally gay) people’s identities as sexual beings. His comment is also completely gender-blind and ignores women, straight and queer, who enjoy condomless sex on PrEP or use PrEP in order to have a child — you know, a real party. — Mathew Rodriguez, community editor of TheBody.com
5. Overbilling of Federal Funds in Los Angeles County
A California Judge ruled in April 2015 that, “AIDS Healthcare Foundation must face claims by Los Angeles County officials that it overbilled the county $5.2 million for patient treatment.” It is alleged that, similar to the overbilling claims in Florida, AHF has been defrauding federal-funding sources for people affected by HIV in L.A. County for about eight years. In addition to the $5.2 million, which was discovered in audits, the county has had to spend over $1.8 million to defend itself against lawsuits involving AHF. Considering the scarcity of public health funds, a loss of $7 million is a serious threat to much needed services for people affected by HIV in the county.
Ensuing the overbilling charges against AHF in L.A. County, now retired Supervisor Zev Yaroslavsky said of Weinstein: “He’s used his nonprofit organization in a crass and bullying political way to get his way, which is to avoid being held accountable.”
Afterwards, an internal email authored by Weinstein was discovered that read, “We need to go after Zev [Yaroslavsky] directly and hard. He is the real power behind our problems with the county on porn, the audit and fee-for service. Plus, he is a lame duck and an arrogant jerk. His Berman-Waxman power base is dead and he and others need to be taught a lesson.” — Eric Paul Leue, HIV activist and director of sexual health and education at Kink.com
6. Fear-Based Safe-Sex Campaigns That Further HIV Stigma
A recent series of AHF advertisements depicted two people or various races and gender in bed, presumably post-coitus, with the caption “Trust him?”
This stigmatic view of sex and trust is both reductive in personal responsibility and stigmatizing towards HIV-positive people. It suggests that people living with the disease are akin to criminals who lie in order to have sex, or even intentionally spread the virus. Sure, the people behind the AHF campaign may argue differently. However, it is hard to ignore the criminal theme of the advertisements that, by default, further marginalize people living with HIV and keeps fear in the forefront of safer sex messaging. As one Facebook user stated, “This does not say ‘fear HIV.’ It says, ‘fear people living with HIV.’” — Tyler Curry, HIV activist and senior editor of HIV Equal Online
7. Intimidating Other Organizations, People, and Practices Who Get In Their Way
The famously litigious agency has sued (or threatened to sue) many individuals and organizations in their path over the years, including counties, cities, departments of health, and even smaller agencies with whom AHF had territorial disputes. AHF even withdrew funding from a Louisiana advocacy event when they learned a plaintiff in their whistleblower lawsuit was involved in its planning. After this was revealed, they reinstated the funding without apology — and promptly counter-sued the whistleblowers. AHF’s latest strategy is to simply gobble up the competition, as in the recent announcement they have acquired the largest community-based agency in the south, AID Atlanta. — Mark S. King, HIV activist and writer at MyFabulousDisease.com
8. Financial Leveraging Against Smaller Organizations
In a 2014 lawsuit against L.A. County, AHF’s attorney, Samantha Azulay, argued for the invalidation of county funding contracts with smaller HIV and AIDS organizations with the words: “…You know, there might be some impact on these contracts, but maybe you’ve got to cut up a couple trees to save the forest.”
Reach LA, a youth organization with specific focus on HIV-affected African-American, Latino, and transgender youth, was among the “couple of trees” and it lost $100,000 funding.
In a 2013 dispute, AHF refused to pay rent for a space it had occupied since 2003 from Maitri, an AIDS hospice in San Francisco. The dispute arose when AHF refused to pay fair market rent for the property after opting for the renewal of the rent contract. Maitri has an operating budget of about $2 million, while Weinstein claims that AHF has a budget of $1 billion. The rent refusal caused Maitri an approximate loss of more than $300,000. AHF only had to pay $60,000. — Eric Paul Leue, HIV activist and director of sexual health and education at Kink.com
9. Forcing Condoms in Porn
In the last two years, AHF has led a costly media campaign to push forward legislation that would enforce condom use in adult film productions. But what may sounded like a good idea can actually be a dangerous limitation of access to other and possibly more adequate prevention options — and it threatens performers with serious infringements on medical and personal privacy. For the past five years, many public health officials have repeatedly argued that this was a waste of money, as the adult film industry, with zero on-set HIV infections over the past ten years, is not where the epidemic demands our attention.
In a recent hearing in front of the California Occupational Safety & Health Standards Board, 19 organizations, numerous performers, and unaffiliated medical professionals all opposed AHFs proposal, which Weinstein is now trying to push through in form of a state-ballot initiative. Many are appalled by AHFs proposal to ignore highly efficacious and proven prevention options such as PrEP and specific industry-developed testing protocols, all-the-while removing performer’s rights for personal choice to access and control. — Eric Paul Leue, HIV activist and director of sexual health and education at Kink.com
10. An Alleged Pattern of Criminal Conspiracy
A stunning whistle-blower lawsuit made public this year against AHF charges the agency with ten counts of defrauding the government, conspiracy, and a “multi-State kickback scheme” to maintain service quotas and keep the government-funded gravy train rolling. The suit, brought by three former senior staff members of the agency, includes internal documents that outline payments to both staff members and clients in an attempt to direct people who test positive into care at an AHF clinic — without properly offering them choices to seek care elsewhere. This strategy, known as “captive care,” then allegedly allows AHF to bill freely for client services obtained illegally, according to the lawsuit. — Mark S. King, HIV activist and writer at MyFabulousDisease.com